Interview with a Father Raising a Bilingual Child with Autism, Part 1

July 26, 2013

Eugene Ryan is a university teacher in Japan and a researcher studying the effects of bilingualism on the linguistic and cognitive development of children with Autism Spectrum Disorder (ASD). He is also the father of a bilingual child with autism. In this insightful interview (which continues with Part 2, 16 months later), Eugene relates the early struggles and successes that he and his wife have experienced in their quest to support their son’s language development. Thank you, Eugene, for offering to share your story and your moral support with others who are facing similar challenges.

Could you tell us a little about yourself and your family?I’m from Britain, but have been living and working in Japan since 1994. I currently work full-time as a teacher at a Japanese university. My Japanese wife and I are both fluently bilingual, and speak English at home as a first language. We have a 5-year-old son, Teeda, and a 3-year-old daughter, Ursula.

Eugene and his son

Our son was diagnosed as being mildly autistic in April 2012. We had noticed that his communication was delayed compared to his peers, but thought this was probably due to the bilingual setting at home. In addition, our family had to spend the previous year living apart for work reasons. In February 2011, my wife received an unexpected job offer in another part of Japan which she decided to take. There was no time for me to also look for work in the area, and I had already signed a contract for the following year at the university where I was teaching. While our daughter was too young to notice the difference, the adjustment was hard for Teeda, with partings especially tearful. It was easy to feel that this trauma had temporarily affected his development.

Teeda does not share many of the symptoms of classic autism. He is cheerful, tactile and sociable, so this also allayed our concerns until the diagnosis. Although mild, or high functioning autism (HFA) is far from the worst challenge for a child, as parents we nevertheless had to go through a period of shock and some denial before we could begin to start coping with Teeda’s condition.

For the first six months or so in his new school, the situation did not look promising as he seemed to be making little obvious progress. He would keep to himself. When I went to pick him up, I would usually find him sitting alone in a corner immersed in a picture book. While he could communicate with his teachers, he clearly found conversation and interaction with his peers daunting. School events involving lots of noise and people sometimes induced panic. He would try to find a safe place to observe activities such as the school festival or play while being unable to participate in them. For the first four years of his life, being unaware of his condition, it was a no-brainer for us to try to raise him bilingually. After his diagnosis, however, and given his lack of early progress, we realized that we would have to reconsider our position.

“…an alternative view suggested by recent research appeared to show that not only did bilingualism not have a significant negative effect on language development for autistic children, it could actually benefit them in several ways.”

What did you see as the pros and cons of raising your child bilingually?
A flurry of research made us aware that bilingual families in Japan with children experiencing a language delay were generally recommended to revert to monolingualism, at least until the Japanese base language was established. This is still the orthodox and pervasive view of the majority of Japanese therapists and medical professionals. We found several case studies of families similar to our own. In all cases, the parents had been advised to switch to monolingualism. In most cases such families did eventually make progress with their child’s ability to communicate, albeit monolingually.

On the other hand, there was an alternative view suggested by recent research that appeared to show that not only did bilingualism not have a significant negative effect on language development for autistic children, it could actually benefit them in several ways. Firstly research has indicated that bilingualism improves cognitive and linguistic abilities such as concept formation, which is often a key skill deficit for autistic children. More obviously, and to me most importantly, switching to Japanese only would feel as though I was cutting him off from half of his family and his identity.

Making the decision as to whether or not to maintain bilingualism was a long and painful process. I felt that the academic research did indicate that bilingualism may be the best road to take. However, I was aware that my preference for bilingualism also included personal and perhaps selfish reasons. Although my spoken Japanese is fluent, I was aware that I didn’t want to lose that personal connection that comes from being able to speak with my son in my own mother tongue. My connection to my family in England is very strong, and I really wanted to share that part of my life with him. I knew that we had to decide, and I found myself desperate for advice about what would be best for our son.

At first I hoped to find an expert in whose judgment I had confidence to settle the matter for us. In part this was because I was wary that my bias might make it hard for me to be sure I was really being objective about our son’s best interest. There was also certainly a desire to find some all-knowing hero to take our worries away. Trying to learn about a condition which seemed so complex often left us feeling powerless and isolated. More importantly, we were far from certain that we were doing the best for our son.

“The danger is that the child becomes ostracized or feels isolated, which can lead to a vicious circle of self-doubt and withdrawal.”

Who did you turn to for advice?
Our first port of call was to talk to our main doctor provided through our city’s health care services. I found him to be thoughtful and intelligent, with a great manner for communicating with our son. He is still a favorite of Teeda’s. Following Japanese orthodoxy, he initially advised us that the key was to establish Teeda’s basic day to day communication in Japanese. After I explained our situation more fully, he supported the idea of our son remaining bilingual.

His take on the situation was nuanced and interesting. On one hand, he reasoned that in Japan, in particular, it is very important to be able to fit in. With the milder forms of autism, the skills of communication and social interaction usually develop eventually. The danger is that the child becomes ostracized or feels isolated, which can lead to a vicious circle of self-doubt and withdrawal. On the other hand, the Japanese have an exaggerated respect for someone who can speak English fluently. This could be a social advantage for Teeda, and in addition, may lead Japanese to judge his behavioral differences more leniently as being a part of his foreign identity. This is, in my opinion, a valuable insight.

Unfortunately, our relationship with this doctor did not remain entirely smooth. I felt that he had made some intelligent observations, but they lacked the support of direct experience. It would have been unreasonable for us to expect our local doctor to be bilingual or familiar with the challenges facing bilingual families. Nevertheless, to get the complete picture, we wanted Teeda to be assessed in both languages, and felt that a specialist who understood bilingualism first hand could give us valuable advice about what to do in our situation.

When we asked our doctor for a letter of recommendation to meet with a specialist who seemed to fit the bill, he accused us of being “greedy.” He argued that we were lucky enough to already have one therapist (himself) without trying to access another. He felt that we ought to appreciate that there was not enough therapy to go around for autistic children. I appreciate his point, but still don’t personally feel that it was wrong to seek a second opinion. He backed up his statement by threatening to withdraw his treatment if we consulted the second doctor. As the main doctor provided by our city, he is responsible for approving all of our access to government-subsidized therapy. As such, we felt that we could not afford to antagonize him and abandoned the idea of seeing the second doctor. The experience did, however, somewhat shake our confidence in him being best able to advise us.

“We foresee many challenges ahead for all of us…but deciding whether or not to be bilingual is no longer amongst them.”

How did you finally arrive at your decision?
Both my wife and I had always favored the idea of raising our children bilingually. What gave rise to doubts was less the fact that orthodox Japanese therapy is strongly in favor of monolingualism, than that Teeda himself seemed to be stagnating linguistically. By equal measure what finally reassured us that we were on the right path was that in late January of this year (2013), he suddenly started to bloom in his development.

It’s difficult to be sure what the trigger was. Children at the age of four or five tend, in any case, to undergo a dramatic development in spoken communication. It may be that he was shrugging off any lingering trauma from the year that we had to live apart as a family. At the time I felt that it might be due to the use at home of the child-centered therapy I had found in the book TalkAbility, produced by Canada’s Hanen Centre. As an example, I would let Teeda plan his own day at the weekend. We would list several activities he wanted to do, and then I would negotiate in some which I wanted him to do. He seemed to love the idea that his day had a structure over which he had some control, and that if he could be patient, the things he wanted would come to him.

At any rate he was visibly a happier, more confident, and responsive child. He has continued to develop smoothly since then. Our regular speech therapist says that his communicative level is currently around that of a typical late three year old, so about a year behind. His English is a little better than his Japanese, but his reading in both languages is well ahead of his age group. We foresee many challenges ahead for all of us in helping Teeda to fulfill his potential, but deciding whether or not to be bilingual is no longer amongst them.

“…there is no scientific basis to support the idea that bilingualism delays the linguistic and cognitive development of children with ASD.”

What advice would you give to families in a similar position? Firstly, I would encourage them not to feel intimidated into giving up bilingualism for their child if their instincts tell them it may be beneficial. As every child is different, though, in some cases bilingualism may not be the best path. In our case it was clear that our son felt that being English was a part, perhaps the dominant part, of his identity. It’s hard to know how identities are formed exactly, but my guess is that he used being English to explain to himself why he was different from his classmates.

If parents can find time to do the research, they will discover, as I did, that there is no scientific basis to support the idea that bilingualism delays the linguistic and cognitive development of children with ASD. Study alone, though, may not be enough to give you the confidence that whatever you choose is right for your child. It really helps to reach out to others, whether other families in the same situation, therapists, teachers or anyone who will listen. Eventually you are likely to find and get to know people whose experiences are close to your own. Having this kind of connection was certainly a great source of strength for us. The best kind of ally in this situation is someone who has already been there.

Eugene Ryan
Eugene teaches at a university in Aichi Prefecture, Japan and researches the effects of bilingualism on the linguistic and cognitive development of children with Autism Spectrum Disorder (ASD). He has lived in Japan for more than 15 years, and his wife is Japanese. They have two children, a five-year-old son who is mildly autistic and a typically developing three-year-old daughter, and are seeking to raise both children bilingually.

Thanks for this. I know the journey is far from over, but good to hear how you’ve progressed to this point. One additional thought is that giving a child with ASD the gift of another way to communicate (English) can only be beneficial. The child him/herself can make the choice of which language to use. Have you seen this video?https://www.youtube.com/watch?v=JnylM1hI2jc
Please watch to the end, you won’t regret it. All the best.

That’s a great post! I’m curious did Teeda have an opinion on whether to keep English or drop it? My child isn’t autistic but she is very vocal in her disapproval when I use the wrong language with her.

Teeda was too young to say directly, but he clearly enjoys using English. I’m not sure why, but I’d guess that he thinks he’s English. He’s happy enough to go along with whichever language is used. I imagine that as he gains fluency and confidence, he’ll start to identify more with one than the other.

Eugene,
I am a non-native speaker of English but am trying to raise my 2-year-old-son bilingually. Your story is very different from mine, but you and your family’s strong heart towards the situation really made me so inspired! And because of that, I would like to express my sincerest thanks!
Good luck to us in this bilingual journey! Kudos to all the parents!

Very interesting story. Wish you and your family all the best for the future, but sounds like things are turning out well.

This weird reaction to requesting a second opinion seems to be common with Japanese doctors? We had a similar experience, where the doctor clearly told us, that if we went to see another doctor, we shouldn’t bother coming back to him. Which is what we did. (Turned out his diagnosis was wrong, too.)

I also have the impression that Japanese patients almost never request a second opinion, so maybe they’re not used to it and find it very insulting. A too big ego might also be a problem. In your case, I find that he’s almost abusing his position. Still, great that your son seems to be doing well nevertheless.

Thanks for the response Leila. As we still need to work with this doctor, I need to restrain myself from commenting further on him. I can say that I’m so glad that we didn’t just trust what we were told. Frightening to think that our son would have not got the care he needed. Anyway, all the best.

My son was diagnosed with autism at four. We were raising him and his older (NT) sister bilingually. Our pediatrician (who was herself bilingual) advised us to drop one and concentrate on English. For a variety of reasons (a- she was pretty crap at the rest of what she advised us, b-my partner’s English isn’t brilliant and therefore ran the risk of doing more harm than good, c-we both fundamentally thought that our son’s culture was important enough to pursue it) we continued to raise him bilingually. He is now 12, and fluent in both languages. Although lazy in both… Go with your heart, after all it wasn’t too long ago that autism was blamed on ‘refrigerator mothers’ by the professionals.

I think that I somehow managed to miss your reply. My memory isn’t what it used to be, so if I have already written to you please ignore this. I can sympathise with your experience with the doctor. In our own case, we were so keen to find someone to tell us what we could do, that it took us a while to realise that no-one knew better than us about our child. Good for you for getting him fluent in both. I hope that I can match that achievement.

I am English and my husband is Polish and we raised our sons, one ASD and one NT in both languages in Poland and now in the UK. The ASD one did learn to speak slightly later. They are 15 and 16 now and speak both languages fluently. I think you have to go with what’s natural to you and that has to be speaking your own language to your child. It’s great when they have a good relationship with their relatives and an ease of conversation in both languages. They don’t know how lucky they are!

We have been to endless doctors in both countries and I can’t say life is easy but I try to keep on pushing to get the help we need.

I wish you best of luck in getting the help you need. Hats off to you that you raised them both to bilingual fluency. I hope that I can do as well. Our son asks me several times a week if he can go to England, which is bittersweet, but shows the importance to him too of maintaining the link. As it happens my sister’s partner is also Polish, and they have two dogs, so my boy still speaks to dogs in Polish. All the best.

This is our story. It’s information that I want others in our situation to have…

When a bilingual child is diagnosed with autism (and perhaps other conditions with language delays as well—not sure) the common advice is to drop down to a single language. It makes sense…the idea that more than one language would put undue stress on the child and further delay language. This is the advice that our family got, but it didn’t feel right to me, so I urged my husband (a Japanese native) to wait. Come to find out that this advice is not based on research. Also came to learn that research specific to autism had recently been done by some reputable researcher, and with a good size sample. This is that study…

Hambly, C., & Fombonne, E. (2012). The impact of bilingual environments on language development in children with autism spectrum disorders. Journal Of Autism And Developmental Disorders, 42(7), 1342-1352. doi:10.1007/s10803-011-1365-z

Abstract: The impact of bilingual exposure on language learning has not been systematically studied in children with Autism Spectrum Disorders. This study compared the social abilities and language levels of children (mean age = 56 months) with ASDs from bilingual (n = 45) and monolingual (n = 30) environments. Bilingually-exposed children were subgrouped based on simultaneous bilingual exposure from infancy (SIM, n = 24) versus sequential post-infancy bilingual exposure (SEQ, n = 21). Despite significantly different amounts of bilingual exposure across all groups (p =.001) and significantly stronger social interaction scores in the SIM group compared to the SEQ
group on the Vineland Adaptive Behavior Scales-II Interpersonal subdomain (p = 0.025), there were no significant group differences in language level. Bilingually-exposed children with ASDs did not experience additional delays in language development.

The authors went on to say that limiting learning and exposure to one language DID put undue hardship on the family unit, and extended family unit. This is significant, too, because this is something that would play into the minority families and the access issue…access to diagnosing, services, information, etc.

I especially like the part that the SIMs scored higher on the social interaction scores.

Thanks for responding to this piece. I am currently researching the field of bilingual children with ASD, and actually there are several articles which demonstrate that there is no scientific justification for making the child monolingual. As you say there is also evidence that there may be even some key advantages to raising an ASD child bilingually when the parents have two languages. There are a couple of articles listed at the end of my piece, and I can tell you some more if you are interested. You can get in touch using my email also listed in the piece. I agree that raising awareness of this issue is important.
Thanks again.

I also have a son with special needs – mild autism and various other problems. He is now 4.5, and the youngest of three – my other children are NT.

I have also encountered general opposition from health care professionals towards bilingualism. I even had a doctor refuse to refer my son for speech and language therapy on the basis that we were a bilingual family, so it wouldn’t do him any good! The same doctor also accused me of deliberately sabotaging my son’s development through my insistence on speaking my own language to him!

I ignored it all and perservered. I researched speech therapy methods by myself so I would be able to use it with my son. We did eventually get the necessary referral, but I continue at home too.

And now he shows clear signs of understanding and responding to both languages, even if his active speech is limited to a handful of words in both – this would most likely have been the case even if he were bilingual anyway.

In our case, perserverance has been the key, and absolute confidence that we are doing the right thing – I never had any doubts that we should continue with bilingualism, and I have no intention of stopping, although I fully expect more opposition in the future!

Thanks so much for getting in touch. Every parent has to make their own choices, but I think that you are absolutely right in the ones that you have made. I sincerely wish you all the best in fighting for the best for your son. I just finished setting up a website to help bilingual families make the best decisions for their ASD children, which is here: https://eugene-ryan-2i8u.squarespace.com/about.

Basically I’d like to help other parents understand that all the science supports the benefits of remaining bilingual, and to provide a space for them to talk to each other, researchers and therapists. Some way off that goal so far, but hope that it may be of help. So again, best of luck with all your efforts.

My son has high functioning autism. He had speech delay when he was young. Learning to speak is always struggling and frustrating. Although now he, 11 years old, still makes grammatical errors occasionally, he speaks, reads, and writes in both English and Chinese. His IQ is within 110~120 only, but he is academically strong in all his subjects in a mainstream school in Singapore.

We are from Taiwan, and have been living in Singapore before my boy was diagnosed at 3 years old. He was enrolled in an Autism school in Singapore when he was 3 and a half. The school staff suggested us speak English with him only as English is the official language in Singapore. They told us it’s already difficult for autistic kids to master one language, needless to say being bilingual. I followed suit and it really gave me a hard time because both my husband and I were not English educated. We ourselves had difficulty understanding English and speaking English back then. But I took the challenge bravely. I even did speech therapy for my son in English by myself because we couldn’t afford the pricy speech therapy here.

I’d say, both my son and I learned to speak English at the same time. We spoke broken English with him until he entered primary school. His language development was always behind same age children until he entered primary school. Singapore is a very different environment when it comes to language. People here are usually bilingual, and many of the children here don’t really master any language until they reach grade 2. For instance, some younger children mix the English and Chinese to form a sentence if Chinese is their home language. Hence, my boy’s speech problem was not so obvious then. But I do find there are more problems in my son’s language learning process. He made more grammatical errors in his speech, stuttered very often and repeated the same words and phrases over and over. What made matters worse is that he started to learn Chinese as his mother tongue, the required subject in school.

Raising an autistic kid in Singapore is really painstaking. With limited resources, high cost of therapy expense and stressful educational system, you have to learn to DIY almost everything. I’m not going to detail what I did for him here. Now he picks up higher Chinese. Not every student is allowed to take this subject unless they reach a strict criterion. There are only 25 students among around 100 Chinese students in his school learning this subject. As far as I know, most autistic children here are exempted from learning Chinese in order to reduce the burden of primary school leaving exam. As to his English, I can’t say it’s excellent, but still within top 10 in his class, the top class in his school.

My conclusion is, there is difficulty in being bilingual for autistic kids, but that doesn’t mean it’s impossible. You’ll have to be persistent and hang on tight. Perseverance leads to success.

Although my son is much younger, as a parent I can say that I am familiar with some of the challenges you faced. Firstly, for what it’s worth, I wanted to congratulate you on how hard you and your son have been fighting to succeed. Secondly, I think that there would be a value in sharing your story with other parents, as many of us feel like the challenges are impossible at times. Your story of not giving up would offer encouragement. If you would care to join our Facebook group Bilingual Children with Developmental Differences, there would be many parents eager to hear about your experiences. One of our members is from Singapore too, and has also raised her son bilingually (Japanese-English). The URL for that is here: https://www.facebook.com/groups/155717381272532/

Hi,
My name is Lee Harris, I’m English but live in Brazil with my partner and son Lucas who is 2 years 5 months old. He has an eating problem meaning he hasn’t eaten properly for 1 year 5 months. 2 weeks ago autism was mentioned and he now has a physiologist and speech therapist and are awaiting an evaluation of a neurologist. I’m concerned as I am the main carer and Lucas clearly has a greater vocabulary in English as opposed to Portuguese. When this evaluation takes place and the neurologist doesn’t speak English, how is he going to know exactly how his speech is developing? Even more worrying is that the speech therapist and physiologist are preparing reports for the neurologist but neither speak English. I’m basically after advice, when they evaluate should I accept what they say or should I also seek evaluation in the UK also? I’m a bit lost at the moment as I actually feel my son has stomach issues, now has eating issues, I’m of the opinion if his gut is repaired healthy diet that he actually eats (less his milk protein, fructose and soy allergens, also sensitivity to gerd) instilled he will catch up quickly. He has a vocab of approx 180 words in English and 100 in Portuguese. Does anyone have any advice, I’d be very grateful.

Lee, I’m sorry your son is experiencing these difficulties. It sounds like you’re pursuing the proper course, seeking to diagnose and treat these issues with a team of specialists. At the same time, I think it would be wise to be cautious, and perhaps also consult with specialists who are bilingual themselves and have experience of bilingual children, if you receive recommendations that are contrary to your bilingual aim for your son. I send my best wishes to you and hope that the situation will soon improve.

Thank you for sharing your experience, for me it really is very valuable and encouraging to know ASD doesn’t hinder from learning two languages.

My situation is a bit different, as we are expats living with our two children in another country. My daughter is now 26 months old and she shows some autistic traits, her speech is basically non existing (mostly sounds and screams for attention). So far I “got” her saying like 5 words in total, and next day she acted as if she didn’t remember them at all. About four months ago, she started going to a day care, which is in another language, so we thought she’s not developing because she’s linguistically confused. Another factor was she had some hearing loss after ear inflammation earlier this year, and we were also told while she can hear sounds and noises, she may not be able to hear the words clearly enough to understand them. Three months ago we had her tested again and this time there was no sign of any hearing impairment. This got me suspicious and I started looking for the information. Daycare assistants also noticed she is “distracted”, does not respond to her own name and has problems involving other children into her play. We are currently waiting for a professional evaluation, but I guess any help given will be in another language. I wonder what we should do in such a situation, I guess we will have to work with her at home in our own language, as none of us is really fluent in the other language (well, we speak it, but the vocabulary will never be this rich).

Have you got any experience or information about such cases? I would appreciate any additional info.

Hi Agnes, I’m sorry to be slow getting back to you. As you said, our experiences are different in some ways, but I may be able to be of help. Would you mind contacting me directly so that we can discuss this in detail?

I’m not an expert or specialist, but from what I have researched I would say that the answer to your question is to work with your child in your own language. There are a number of good reasons for this. I would be happy to point you in the direction of the papers which deal with this point.

Hello Eugene, apologies for very late reply – as we’re still awaiting for diagnosis (things take really long time here), I think it may be useful to get some scientific support for keeping both languages. I will send you an email via my gmail account, thanks in advance!

Hi. I do research on pragmatics developments with autism. After peer reviewed research, I suppose the main deficit in neurobiological processing causes language metacognitive impairments then it affects pragmatics deficits.

Hi Eugene, So happy I found this information, thank you for sharing your knowledge and experience.

We don’t have a diagnosis of ASD but we’re expecting one even though my little boy’s main problem is communication and he doesn’t really have all the traits apart from lack of eye contact. He also has chronic ear infections and glue ear so I think it’s just a communication problem but maybe I’m still in denial? We live in France, originally from England. So English is our first language and my little boy has always had a French child minder since he was 5 months. He is now 29 months and has about 10/15 words; his understanding isn’t great but better in very simple English then French. We have weekly appointments with French ‘specialists’ all in French etc. I am panicking like we are making his delay worse. I have been thinking of going back home to give him a better chance. As you can imagine that’s not an easy decision to make and my partner thinks it’s a bit drastic. I really would like to stay but want the best for him… Thank you!

Hi Kirsty, firstly regarding the question of whether to go back home to England – If the reason that you are considering it is because you worry that exposure to two languages might overwhelm your boy, my advice would be that this is definitely not necessary. According to all the science so far, if your child has autism, a bilingual environment has no negative effects on their development, and may in fact be of benefit. If it would help you to feel reassured, we could talk on Skype, or I could point you to the academic studies that exist. I am the father of a bilingual autistic boy, so my sympathies are engaged, but I am sincerely attempting to give you the best objective advice. If you read the available academic literature you will be able to judge for yourself in any case.

Yeah I read your story. It has given me hope! This seems to be the right advice after looking on your Facebook page. I’m only at the beginning of what seems like a roller coaster journey. I feel a bit hopeless while we go through this diagnosis. Not knowing what to do for the best. It doesn’t help France is really behind with help and support/intervention that I am doing everything I can to help Jack with aba therapy and anything I can find online. I feel like there’s so many positives with Jack if only I could get inside his little world. I could skype, how will that work? Thanks for this help.

When I read your story, even that post was long time ago, so your story look similar to my story. I came to America when I was 19 years old, my husband came here when he was 11 years old, so he speaks English very well. I have 2 boys, 15 and 13. The young boy was diagnosis Autism when he was 3. Everything your son does, my son as the same as well. At 13 years old he react like preschool age. I am happy now because he can do by himself most independently. He took 3 general classes. He can cook, wash clothes, and wash dishes. When I ask him to do for me, he will do but take a time longer. I just want to share with you, I hope some day he will be normal like somebody else. I wish you have more power to help your son, he will be okay but take a little longer as someone else. You should get involved with community or big family to go with. My son now in Boys scouts, trample Union, karate class, swim at a YMCA. Every year my family have 2 times as camping and 2 long distance vacation. Good luck to you, family and Teeda. My English not good. Hope you will understand.
An

Thank you so much for taking the time to get in touch. I thought about what you said about joining groups. You encouraged me to try the Scouts with our boy. In this way you may have had a positive influence on his life, so really, thank you.